I think that if we let everything be coloured by (understandable) resentment over how little has been done for us in the past, we'll end up greeting every good new thing as though it's a piece of shit and I think we've seen a lot of that lately.

I think it's important not to drive researchers away who are, as msf says, seriously trying to help us with the resources available to them. It's not their fault that they're having to start where they are and that we're 20 or 30 years behind where we should be.

I think we should welcome this kind of initiative.

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I agree. Anything decent is better than nothing. We have to make forward progress even if it's small and/or relatively minor in terms of overall impact on the disease.

My frustration is that research money is being spent on side issues when we don't have the research funding for the main, core issues. Shouldn't THAT come first? Shouldn't the focus at this point be on finding out what this illness really is, getting biomarkers, addressing things closer to the root? Then we can work on the secondary details. Poor sleep is not at the core of ME/CFS. That isn't to say that improving sleep wouldn't make a lot of us feel better. I know that sleep meds have made my life more bearable. But sleep meds already exist. Most of our top specialists know which ones work best for PWME. It's just a matter of using them. I know that doesn't happen in the UK, so this research may help patients in the UK get better treatment for sleep disorders related the ME/CFS. That's good, but it's not a big thing in the overall progress in ME/CFS research.

I'm grateful for all the decent research dribs and drabs we get, but I'm also a bit angry that I have to be grateful for these relatively piddly research projects. It feels like being grateful for getting a half cup of rice to eat every day. If you're starving, the half cup of rice is a big deal, but it's not really what you need and it's not solving the real problem of why you're starving. I'm frustrated that we're getting these dribs and drabs instead of the major research we really need. We deserve better.

I agree. Anything decent is better than nothing. We have to make forward progress even if it's small and/or relatively minor in terms of overall impact on the disease.

My frustration is that research money is being spent on side issues when we don't have the research funding for the main, core issues. Shouldn't THAT come first? Shouldn't the focus at this point be on finding out what this illness really is, getting biomarkers, addressing things closer to the root? Then we can work on the secondary details. Poor sleep is not at the core of ME/CFS. That isn't to say that improving sleep wouldn't make a lot of us feel better. I know that sleep meds have made my life more bearable. But sleep meds already exist. Most of our top specialists know which ones work best for PWME. It's just a matter of using them. I know that doesn't happen in the UK, so this research may help patients in the UK get better treatment for sleep disorders related the ME/CFS. That's good, but it's not a big thing in the overall progress in ME/CFS research.

I'm grateful for all the decent research dribs and drabs we get, but I'm also a bit angry that I have to be grateful for these relatively piddly research projects. It feels like being grateful for getting a half cup of rice to eat every day. If you're starving, the half cup of rice is a big deal, but it's not really what you need and it's not solving the real problem of why you're starving. I'm frustrated that we're getting these dribs and drabs instead of the major research we really need. We deserve better.

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In the UK, we don't seem to have strategic initiatives focused on particular diseases. I believe that's what we need for ME but we don't seem to have it.

As a result, you get individual researchers coming up with ideas within their own expertise and field of interest (presumably sleep, in this team's case) and they apply for funding for their idea and they get it according to whether it looks good as an individual project. I think that's why it's looking piecemeal.

In the US I think things look more strategic because you have there some teams that have attracted large-scale private funding to an extent (OMI, Columbia) and have brought together teams to follow those strategies.

PLEASE SHARE - SLEEP STUDY. The SAFFE study using Fukuda and the Canadian criteria is ongoing but need more participants

It is a voluntary study with all meals and refreshments provided, and reimbursement of reasonable travel costs. You must be between 25-65 and be able to speak English. If you are travelling by car a voucher is provided for free parking right outside the facility. The research hospital is a secure facility in the grounds of the Imperial Hospital.

A private room is provided for your stay. You will be required to have a telephone call to assess if you are suitable and if so you will travel to the facility for a one night stay during which you will be assessed, blood taken, weight, BP and blood sample, and the usual medical history. Once this is done you are free to rest on your bed. Early evening the team will put sleep monitoring equipment on you and leave you to sleep. You have the choice of a community room if you are able or you can just stay on your bed and rest.

The team are very experienced in dealing with people with M.E so are mindful of limitations and need to rest. The ward and rooms are very quite.

If you are successful you need to travel again to the facility for the research to take place. This is done over three weeks, a Monday to Friday (four nights) stay one week where you will be given either the drug or the placebo, and then a weeks break before you return to complete another Monday to Friday stay and are given the drug or the placebo.

The trail is about monitoring slow wave sleep using sodium oxybate. If you want to participate in the study but are unsure of the effects of this drug on your health, or interaction on current medication or any other query you may have then please contact the research facility on the email below.

During the day you are free to do whatever you wish once you have taken a few cognitive tests, for example remembering where items were on a screen before they disappear and are reordered. The tests take a few minutes.

If you have any questions about the study please direct them to the team.

All of which you can read about on the link below. Some of you will recognise Prof. Puri from previous research and his involvement with M.E over many years. Prof. David Nutt was the drug advisor to the Government amongst many other roles.

The study is located here and will reimburse you for reasonable travelling costs;

Anyone have any idea whether this trial is getting past the recruitment hurdles it's experienced? @Sasha, have you heard anything?

I love the idea of trying Xyrem in ME/CFS. I doubt it would do much for PEM or physical fatigue, but it might do wonders for both unrefreshing sleep and cognitive dysfunction.

I wish they'd made it easier for patients to participate. I wouldn't have included any of the sleep study crap. They should have just given people the drug (or placebo) to take home, and then had them come in and take questionnaires to see if they're doing better. Knowing how their sleep structure would change would certainly be interesting, but all we really care about is whether the drug is helping symptoms.

I wish they'd made it easier for patients to participate. I wouldn't have included any of the sleep study crap. They should have just given people the drug (or placebo) to take home, and then had them come in and take questionnaires to see if they're doing better. Knowing how their sleep structure would change would certainly be interesting, but all we really care about is whether the drug is helping symptoms.

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I disagree, I'd rather see a more rigorous study, than yet another questionnaire based study.

I'm not convinced Xyrem will have any effect on fatigue and other symptoms, but may be helpful for sleep. It's not an exciting outcome, but I'd rather see more clinical trials, than less.